my story

[nessa]

~ my story~
i was diagnosed when i was 18 1/2 yrs old. i was getting horrible ear aches i was sick all the time and every doc that i went to see could not give me a reason why all this was happening to me. until one night where i couldnt take it any more i was throwing up blood i had a fever and i felt like i was literally dying. my mom called 911 and they took me to a near by hospital which the docs there told my mom you have a very sick child here. hearing that made me even more worried well the next day they took into to surgery where they put tubes in my ears and cleaned out my sinuses. i had to stay in the hospital 2 weeks until my results came in and there is when they told me i had wegeners. its was one of the worst days of mine and my moms life when they told us what it was and what it can do. i just remembered thinking my life is over. after that i began mtx and prednisone which i guess wasnt strong enough because i relapsed again after a month of being on it. so my doc switched me to cytoxan soon after that i discovered that i was pregnant so i had to stop all meds instead of the prednsione. my pregnancy went fairly well acutally and i gave birth to a healthy baby girl on oct. 7 2007 she weighted 4 15 oz which was small but they said it was due to the steriods. for two years aftter that i was in full remission. then in early 2010 i started getting sick again this time it hit worst then anybody could imagine i had to stay in the hospital for two months i had too get half of my right lung removed my hearing decreased so much i starting getting a saddled nose i was throwing up blood all this due to me relapsing. my doc ordered me to get rituxan chemotheraphy during my stay at the hospital for a month. which did wonders for me i felt like my old self again so now all though the damage on my nose in my ears and on my lungs have been done im feeling alot better... i just taking it day by day now, i see my rhemotologist at the end of this month so we will see what he says this time im just greatful to be alive and to have my daughter and my mom by my side cuz thats what keeps me hanging on.. =) nessa

[drz]

Thanks for sharing your story, Nessa. Welcome to our forum and best wishes for better health ahead.

It is tough at times adjusting to the losses from a serious attack of GPA but a close brush with death helps one appreciate what we have left even more. So hope you have more happy days.

[nessa]

Thanks for sharing your story, Nessa. Welcome to our forum and best wishes for better health ahead.

It is tough at times adjusting to the losses from a serious attack of GPA but a close brush with death helps one appreciate what we have left even more. So hope you have more happy days.

thanx for replying and i hope to have more happy days too... =)

[Dryhill]

Yes Nessa, thank you for sharing your story.

I have just finished watching a tv serial about the last part of WW2 in Europe (from the D-Day landings through to Germany's surrender). A lot of the programme contains conversations with those that actually took part (from both sides) and one bit today made me think of our beloved WG. An American was recounting his crossing of the River Rhine and how he heard and felt a bullet go passed his head - it missed him but killed his best friend who was just behind him. It reminded me how we should be thankful for each day, especially the good ones.

[vdub]

Quite a story; especially the part about being in the middle of all the drugs and getting pregnant. That must have been a pretty trying time for you. Sounds like things are on the up-and-up, tho. Hang in there....

[maria garcia]

Thank you for sharing.

[Al]

Yes Nessa, thank you for sharing your story.

I have just finished watching a tv serial about the last part of WW2 in Europe (from the D-Day landings through to Germany's surrender). A lot of the programme contains conversations with those that actually took part (from both sides) and one bit today made me think of our beloved WG. An American was recounting his crossing of the River Rhine and how he heard and felt a bullet go passed his head - it missed him but killed his best friend who was just behind him. It reminded me how we should be thankful for each day, especially the good ones.

This is also known as a "Rod Serling moment." Rod Serling (or Twilight Zone fame) writes of the defining moment in his life, on the battlefield, having a snapshot made with a buddy. Unaware of an airdrop or munitions coming in without a parachute, they switched positions. The buddy never saw what hit him; Serling was haunted by the twist of fate, writing many stories about just those moments when everything changes in an instant.

Nessa, there is no telling why this has happened to you, or to any of us. Nor is it useful or even possible to come up with an "if only" back story. "Why me?" is a question that has no answer. You are suffering, that is all. Yet, you do have your wonderful daughter who needs you, as you need her. You have your mother, and she has you. And now you have us, for the bad days--and the good. May there be more of the good!

Al

[jola57]

Hi Nessa thanks for sharing, I am so glad that you had a healthy little girl. My two sons both were just a tad heavier and now they are strapping 6 foot men, so no worries, she will be just fine. Flares seem to be worse than the original illness. I hope your feeling well will continue.

[Al]

Flares seem to be worse than the original illness....

Dunno. Nessa's original seemed not exactly a walk in the park. For what it's worth, my one flare was much milder than the original, or at least what I am calling the original. But then, everyone is different.

Al

[Sangye]

I haven't heard that flares are worse than the original illness. I've heard Wegs docs say the opposite, since flares are usually caught earlier. Of course there's no rule against having a flare that's worse! The Wegs dog is an unpredictable feller.